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At both tech companies and design studios, inclusive design has become shorthand for “good design,” and the “right thing to do.” The phrase is so common in tech that a quick Google search yields countless UX blog posts and video recordings extolling its virtues. But as a phrase that seeks to combine inclusivity with design becomes more popular, its limitations also become more glaring.

While inclusivity is undeniably important, the definition and implementation of inclusive design can be problematic. It often fails to treat disabled people as equals—both in actual employment and in empowering them to make real changes on products and processes. If design truly is to become more inclusive, the process needs to become more equitable.

According to the U.S. Bureau of Labor Statistics, 19.3% of disabled people were employed in 2019 and 17.9% in 2020—a 1.4% decrease in a year ravaged by the coronavirus. But even before the pandemic, disability employment rates averaged just 18.7% between 2016 and 2019. In tech, where inclusive design has become the de facto framework to discuss disability and design, representation remains low. Among the handful of tech companies that reported a disability employment rate in 2020, 6.1% of Microsoft and Google employees self-identified as disabled, and 3.9% at Facebook. Meanwhile, according to the Centers for Disease Control, 26% of U.S. adults have a disability.

I’ve worked as a UI designer and a technologist for more than a decade; and having spent years working alongside disabled educators and software engineers, discussions about software accessibility and inclusive design are part of my daily routine. I’ve also done academic research into disability and design, which gave me the opportunity to build deeper connections in the disability community and helped me understand disability from a historical, cultural, and socioeconomic perspective. Instead of “people with disabilities,” as a neurodivergent person, I am consciously using the identity-first phrase “disabled people” in this piece to reclaim the word “disabled” from stigmatization. Disability is a culture, not a marker that delineates us from our environments. “Disabled” is not a bad word.

“Inclusion” isn’t always meaningful—or well paid

Historically in the United States, many disabled workers have been underpaid. Under the Fair Labor Standards Act of 1938, some businesses are allowed to pay disabled workers a wage lower than the federal minimum. Today, some disabled workers make as little as 38 cents in a pay period. Even in companies where disabled workers are paid above minimum wage, they often make less than their non-disabled colleagues. A 2019 study by the U.S. Census Bureau found that disabled people make only 66 cents for every dollar compared to their non-disabled counterparts.

While inclusive design highlights the importance of including disabled people in design processes, it can lack nuanced discussions and clear directives on how they’re included. Those “included” are often underpaid or are included as unpaid “experts.” Even those who are employed don’t always feel represented. A study by Global Disability Inclusion and Mercer found that most disabled employees don’t feel they are “appropriately involved to make decisions” in their work. The study also reveals that many disabled people don’t feel their jobs “make good use of their skills and abilities.”

I conducted an informal Twitter poll asking if disabled employees felt empowered to offer impactful change on the products they work on. 91.4% responded “No.” This isn’t a surprise to Dr. Cynthia Bennett, a researcher in human-computer interaction, who argues that disabled participants are often seen as users of technology, not creators. Their educational background is often “presumed nonexistent,” says Bennett.

A design process that strives to push the boundaries of inclusion should focus not only on the process of design, but also the process of inclusion, defined by equal compensation, representation, and opportunities.

Who does “inclusive design” actually include?

Embedded in inclusive design’s DNA is occupational therapy, which traces its origins back to the 1800s, but matured after World War I as a means to rehabilitate and reintegrate wounded and disabled soldiers into society. Today, in the context of business, inclusive design’s definition is often open to interpretation. While some practice gender inclusion through the use of proper pronouns, others implement skin-tone personalization in game interfaces to promote racial inclusion. But even with a history deeply connected to disabled people, inclusive design encourages everyone else to define inclusion for themselves using concepts that oversimplify disability.

Microsoft’s popular Inclusive Design Toolkit and its persona spectrum use just four categories to classify disability: amputation (touch), blindness (sight), deafness (hearing), and non-verbal (speech) individuals. These profiles equate disabilities with non-disabled people’s experiences as a way to help them understand disabled experiences. For example, an amputee with one arm is equated to a new parent holding a child with one arm; a blind person is compared to a distracted driver; and a non-verbal person to a foreigner with a heavy accent.

Other than their shared inconveniences, it’s unclear how these groups relate to one another, as they likely experience exclusion and discrimination in vastly different and personal ways. Does inclusive design insinuate that a new parent who holds her child in one arm also experiences the gaze and the looks on the street like that of an amputee? Or is it fair to compare blindness to negligence behind the steering wheel? While a Deaf barista who nods and smiles to customers could be disrespected and asked to speak, it is doubtful a hearing bartender in a noisy bar would experience the same. Though well-intentioned, the premise of inclusive design reeks with unconscious bias.

Even as inclusive design can conflate systemic exclusions with daily nuisances, it’s hard to argue against the underlying premise of designing for “everyone.” But, still, who is “everyone?”

“We just haven’t been very specific about what we want,” says Candace Williams, a human-computer interaction researcher who created a skin-tone filter at Pinterest. Williams thinks inclusive design is too broadly defined because specificity makes dominant cultural groups uncomfortable. “I think people even get uncomfortable saying, ‘You’re Black’,” says Williams.
Similar to how the phrase “people of color” is often used to avoid referring to Black people as “Black,” many non-disabled people avoid the word “disabled.” They use euphemisms like “special needs” or “differently abled” instead, without understanding the hidden ableism. While some do prefer and find empowerment in this terminology, many in the disability community do not. Ultimately, it’s a personal choice. After all, disabled people are not a monolith.

But the lack of specificity assumes otherwise. Generalizing disabilities makes it hard to discuss individual experiences in design processes. In turn, this makes it nearly impossible to identify a good metric to assess inclusion and gauge accountability. A company may invite one person with low vision to work on a product and claim their process as “inclusive,” but the product could still be inaccessible to other disabled people, including those with a different type of low vision.

On one hand, inclusive design aims to include “everyone.” On the other hand, the ambiguous “everyone” sets a low bar for disability employment. In this conflicted dynamic, how is “inclusion” measured? What does accountability look like? Perhaps the disability employment rate of a workplace can offer some insights, but very few companies disclose these statistics. “We care about inclusion, but are disabled people working at jobs?” says Williams.

[Source Image: VectorHot/iStock]

When “inclusion” becomes exclusion

The ambiguity in inclusion and the lack of accountability exposes a danger of an inclusion that’s driven by profit. A proponent of personalization and configurations, inclusive design emphasizes the idea of “one-size-fits-one.” But the disability community is diverse. How do companies decide which size fits which one?

As a design process that’s seen as a “money maker,” inclusive design is “including people by virtue of their capacity to increase profit margins,” explains designer and educator Josh Halstead, an expert in disability design. Inclusive design can justify inclusion by the prospect of commercial gains from previously excluded, disabled market segments. These segments correlate with the profiles in inclusive design’s persona spectrum—blind, deaf, non-verbal people, and amputees—but there’s no mention of people with chronic illnesses, cognitive disabilities, neurodivergence, and other forms of disabilities.

Halstead believes that when funding is scarce, companies may allocate resources based on the profit potential of a disability group. This, in turn, affects which disabled groups are included in the design process. In this way, inclusive design’s disability profiles offer companies ways to prioritize, and therefore objectify, disabled people by their perceived profit margins.

Halstead finds the kind of inclusion at the center of inclusive design oppressive, because disabled people are often included as “others.” This resonates with Dr. Bennett’s argument that disabled people are often presumed users, not creators. For example, many design tools are created for sighted people. The “activity and support cards” from the Microsoft Inclusive Design Toolkit is one example. Meant to be printed and used by designers, Dr. Bennett says many activities are inaccessible to the blind. “What if the designer was disabled? I felt very tokenized,” says Dr. Bennett, who is herself blind and says tools like this make it clear that disability “experts” aren’t seen as part of the process.

Halstead, meanwhile, takes issue with the very idea of “inclusiveness” in the corporate world. “Somehow there is a class of designers and builders bestowing the right to be included to the excluded.” He recalls his friend Neil Marcus, a disabled poet and playwright, who once said, “We are already here, and have been here. So what does inclusion actually mean?”

Moving forward with disability design

So should we stop practicing inclusive design? Not necessarily.

Inclusive design is as good as any tool: It depends on who wields it and how it’s wielded. One thing for certain is that inclusive design has helped raise disability awareness among non-disabled people. Seeing inclusive design through the lens of empathy and altruism offers visions of inclusivity. But without concrete steps and specific plans that center the disability community, inclusive design is essentially design thinking rebranded with a dash of inclusivity. If the goal is to break down the boundaries that exclude the disability community, then the bar needs to be set higher. Awareness and ideologies alone are not enough.

A design process seeking to include the disability community should focus on employing disabled people as equal participants. This is a clear difference between inclusive design and what some refer to as disability design or disability-led design.

Designers like Liz Jackson, Alex Haagaard, Jen White-Johnson, Halstead, and others have been advocating for designs and processes that situate disabilities front and center. Disability-led design centers disabled people and offers a more nuanced, equitable, and authentic framework to discuss these issues. Those who are non-disabled and want to participate in disability and design work should educate themselves in disability culture and should seek out opportunities to collaborate with and learn from disabled designers.

Beyond featuring disabled people in stock images on websites and ad campaigns, or even including them as volunteers in design processes and calling it a day, discussions about disability and design should be about the equal participation of disabled people. A truly inclusive design process should include conversations and actions to redesign inaccessible employment pipelines. It should demand employment—not just “inclusion”—of disabled people, with equal compensation, and decision-making power in everything from recruiting and research to design and fabrication. It should demand actual inclusion in every step of product development and in every department of a company.